Waxing and Waning

[Suzan]

Is this the waxing and waning that people talk about? Or could she be getting better? I suspect it's the former and this is what caused us to take so long to find out about the strep connection since she would be worse and then get better. I would think it was from the OT therapy, the new supplement, etc. but maybe it was just the waxing and waning process.

 

But all of a sudden, dd8 is doing much better. I have not changed much with her. We have added the OCD workbook, I have read The Explosive Child and learned some things, the girl with strep in her glass is better (yeah, I know, biggest possibility for improvement here!).

 

Last night she tried to change one of her OCD habits. She could not do it but she really gave it a good try. She has to say "Can I close my eyes and listen" or she can't go to sleep. She knows it's nutty to have to say but she can't not say it. But she came up with that on her own and is ready to try to break the pattern. She has been writing in a journal (her worry book) and writing down all her feelings and frustrations, etc. It has really been helping. She has been much quicker to stop her behavior and say "let's start over" and her episodes of anger or frustration have been much shorter.

 

Please remind me of this the next time she's flipped out again! Right now, I am very grateful for the break.

 

Susan

[kcdc3]

I hate the uncertainty of this disorder!! My dd does the same thing. Since she has been on the Biaxin, she has had tons of days where she was able to "conquer" more. Then, she's had days where she went backwards 3 or 4 steps. It seems like every single time I sit down to compose an email to her doctor to tell him that she is doing great, she backslides within a few hours! Then, when I sit down to let him know I think she has plateaued (like I did yesterday), she comes to me a few hours later and is the best she has been in the past 4 years!!!! I'm really scared right now because her doc told me to stop the Biaxin since it is starting to bother her stomach. So, she is getting ready to venture into a life without Biaxin and I'm an petrified to see what happens. She has come to about 80% with the Biaxin and we've never gotten that better with any other antibiotic. (She's a Mycoplasma P girl).

[thereishope]

I'm glad you're seeing improvement! Sometimes, recovery will come in waves or if anything is residual, if you fight the urge and overcome one thing...other OCD habits/rituals will automatically follow in shedding. If she does experience a setback, take a deep breath amd remember that is normal. The brain is figuring a lot out and it's like it's reorganizing a bunch of information.. My son would have bumps in recovery and as long as it did not surpass 3 days, I tried not to freak out too much. Sometimes even when he had a setback, he'd end up bouncing back even better than he was before.

 

Thanks for letting us know good things are happening!

[Lilyma]

I hate the uncertainty of this disorder!! My dd does the same thing. Since she has been on the Biaxin, she has had tons of days where she was able to "conquer" more. Then, she's had days where she went backwards 3 or 4 steps. It seems like every single time I sit down to compose an email to her doctor to tell him that she is doing great, she backslides within a few hours! Then, when I sit down to let him know I think she has plateaued (like I did yesterday), she comes to me a few hours later and is the best she has been in the past 4 years!!!! I'm really scared right now because her doc told me to stop the Biaxin since it is starting to bother her stomach. So, she is getting ready to venture into a life without Biaxin and I'm an petrified to see what happens. She has come to about 80% with the Biaxin and we've never gotten that better with any other antibiotic. (She's a Mycoplasma P girl).

How long has your daughter been on the Biaxin? My son had labwork that showed mycoplasma (positive IgG but neg. on IgM). I am waiting for a copy of the results to be sent to me, but in the meantime, he has just finished day 7 of biaxin. I've seen some improvement in his mood and facial tics. He told me last night that his vocal tics are bad. I can't tell though, if I am just hopeful for things to be good because then he came home from school yesterday really quiet, and was obsessive about the time this morning and getting to school. All the sudden things were very tense like they used to be. He only has three days left of the Biaxin. I am praying this was the cause of his struggles and this antibiotic works. sometimes I think I have forgotten what the norm and better is..I try to remind myself that if he is recovering, it won't be an overnight change. I guess in a way I was hoping for that.

[simplygina]

Is this the waxing and waning that people talk about? Or could she be getting better? I suspect it's the former and this is what caused us to take so long to find out about the strep connection since she would be worse and then get better. I would think it was from the OT therapy, the new supplement, etc. but maybe it was just the waxing and waning process.

 

But all of a sudden, dd8 is doing much better. I have not changed much with her. We have added the OCD workbook, I have read The Explosive Child and learned some things, the girl with strep in her glass is better (yeah, I know, biggest possibility for improvement here!).

 

Last night she tried to change one of her OCD habits. She could not do it but she really gave it a good try. She has to say "Can I close my eyes and listen" or she can't go to sleep. She knows it's nutty to have to say but she can't not say it. But she came up with that on her own and is ready to try to break the pattern. She has been writing in a journal (her worry book) and writing down all her feelings and frustrations, etc. It has really been helping. She has been much quicker to stop her behavior and say "let's start over" and her episodes of anger or frustration have been much shorter.

 

Please remind me of this the next time she's flipped out again! Right now, I am very grateful for the break.

 

Susan

 

It's great that she is willing to do the ocd "homework". my son will for a time, but if it involves writing he hates it. But ever bit that we do helps. I think the exercises in the workbooks are good for anybody! I'm an avid journal keeper and it really does help get it all out, plus it makes and solidifies connections for me.

 

I've noticed with my son that he tends to improve in the spring. we've had 3 different therapists, and by the time school gets out all 3 of them have felt we've made such significant progress that we can take the summer off. Then school starts and it all goes to ###### again and I am calling the therapist frantic for an appointment. I used to think it was waxing and waning until I noticed the specific pattern. Now, at least for my son, I think of it as high exposure times and low exposure times. For awhile I equated it with sunlight. Now I think the biggest contributor is kids not being sick. His worst times seem to correlate with when strep infections peak. I'm sure the sun, getting outside and moving around and all of that is a bonus as well. He's doing really well right now on the Biaxin, which made such a dramatic, rapid improvement, but part of me thinks that I have to realize that part of the improvement is due to it being Spring. I will know for sure if he is still taking it when school starts again in the Fall and he maintains the improvements.

 

I'm so glad she's doing well right now. I know how happy I've been recently watching my own son's progress. Life is just easier. I've missed having the fun times with him. He's such a great, sweet, helpful, funny kid when PANDAS is trampling his "real" self.

[ajcire]

Susan, I'm glad to hear things are going well! I hope it's the start of great things for her!